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I had my fourth infusion yesterday and I FEEL better but little changes in physical problems. I have leg neuropathy and BPPV (vertigo) so walking is perilous without a cane. No change there but mentally I’m improving. I was told it would be a roller coaster ride of downs and ups but I’m on an old wooden one going only down. It’s a rickety ride.
I got MG at 78 so it messed up my desire to grow old gracefully. I probably had it a year earlier but the VA doctors didn’t catch it until the head of neurology called me one night and told me to go to Eisenhower emergency care immediately and tell them I had MG. Three weeks in ICU and more weeks in hospital and rehab I felt pretty good. I even had friends over for drinks. I have a great kid in 3 hours a day during the week and he not only cleans the litter box but cooks and shops. A great improvement over my last 5.After treatment with IVIG didn’t work I fought for two years to get my doctor who had treated me at Eisenhower, finally abandoning my heath plan and returning to the VA. I signed up for a research program but it’s located in Irvine, 67 miles away. Vyvgart was only approved December 21 so getting him earlier wouldn’t have mattered. He’s aggressive in management of MG and has a wide reputation. I’m in the Palm Springs area and live 2 miles from Eisenhower in Rancho Mirage so having everything near is great. I need drive only 2 miles to treatment. Oh, yes I still drive.
I describe my available energy as a pie (or a quiche) with 25% d going to getting up for coffee, 25% for feeding the cats and making lunch, 25% for dinner and25% for hygiene. I’m in bed in front of my 60” screen watching tennis and TMC. It amazes me how many people in the movies I’ve known- I had Eleanor Parker make me chili- I am stunned that she was such a great dancer.